Project 460532

Children and youth with medical complexity (CMC) are those with complex chronic conditions and/or a neurodevelopmental disability that require specialized care to help with their health care needs. While they represent < 1% of all children and youth -- about 97,600 across Canada -- CMC account for 33% of all resources spent on children's healthcare. Medical advances have allowed many more CMC to survive well into adulthood. However, this has not been matched with increases in availability of supports as they transition into the adult care system. The life stage of transitioning to adult care is especially challenging for CMC and their families. Significant parental support and guidance is needed due to the lack of familiarity among adult providers with rare conditions that arise in childhood, as well as the frequency of disabilities and support needed from medical technologies among CMC that requires caregiver assistance into adulthood. The study aim of PITCare is to assess whether intensive case management led by a Transition Navigator during transition to adult care will improve the family's experience with care coordination, compared to usual care. We will enroll youth aged 17.5 years from Ontario's pediatric complex care programs transitioning to adult care. The youth will be randomized to either receive intensive case management by an APN focused on transitions over a two-year period, or usual care, which will provide transitions support until the youth turn 18 years. Other outcomes related to the youth/family experience of care, health outcomes and the value of the intervention for the health care system will be assessed as well. We will also ask clinicians involved in the care of the youth to assess PITCare. PITCare is a unique project that builds upon strong clinical, research and decision-making network for pediatric complex care in Ontario to address significant care gaps for a vulnerable population during their transition to adult care.